Friday, January 23, 2009

A more sober view on Lidcombe

Articles from the Oxford Dysfluency Conference are now published on the website of the International Journal of Speech-Language Pathology: see here. Here is what Ann Packman, the driving force between the Lidcombe early intervention program together with Mark Onslow, writes on Lidcombe:

Interestingly, however, long-term follow up indicates that some children may start to stutter again many years after treatment with the Lidcombe Program has ended (Jones et al.,2008). This suggests that recovery is not necessarily complete or self-regulated after treatment with the Lidcombe Program.
From a behavioural perspective, it seems that stuttering is brought under environmental control during the treatment and remains so for some years. However, the treatment does not—cannot—remove the initial condition (the underlying neural deficit). Rather, the treatment promotes compensatory neural re-organization which we now know may not be permanent.

It is official, and I share her view (except that I question the strength of short-term effect due to the high natural recovery rate). Lidcombe is far from the perfect and permanent solution. In fact, Packman disagrees with Mark Onslow. I asked him at the conference at the open forum: How come all kids are recovering if there are neurological deficits. He said that it is well known that the brain of kids is plastic enough. Well your colleague seems to agree with me and disagree with you: the treatment does not—cannot—remove the initial condition (the underlying neural deficit). In fact, full recovery of kids in any disorder due to the high plasticity is a myth, a feel-good phrase. Sure, kids' brains are more plastic and can compensate but there are limits. Now if you add the very high natural recovery to this statement, the miracle resembles more a fata morgana.

So does any therapist on Lidcombe make it clear to parents that the treatment does not—cannot—remove the initial condition (the underlying neural deficit)? No! And that's a scandal. It does not of course prevent several of our "expert" therapists turned researchers to making unqualified statements and spreading the myth: Quantitative studies have shown it is an efficacious treatment for eliminating stuttering in children of 6 years and younger. (Rosemarie Hayhow). Research indicates that early intervention is highly successful at normalization of speech development and prevention of stuttering. (Kristin Chmela, Stuttering Foundation of America e-catalogue). Why do they make such statement? Because they have not actually read the original research word by word, and lack the statistical understanding or attitude. For example, I explained to Rosemarie Hayhow my concerns about the Lidcombe trial on statistics, and her shocking reply was that she is focusing more on the qualitative aspects. But yet she is making statements on the trials and thereby propagating myths.

I would suggest a little humility with regard to the question of whether behavioral treatments can cause neural reorganization.

You seem to forcefully reject this proposition, but my understanding is that recent (past 10 years) neurological research has determined that the brain IS much more plastic, even in adults, than formerly believed. For example, there have been recent discoveries that recovery from the paralysis or aphasia caused by strokes often is possible, contrary to earlier beliefs.

So Greg, when you say "They'll find out that this is wrong too. There is no neural-reorganization", I wonder why you make that forceful assertion.

For example, there have recently been studies suggesting that even ong after a stroke, paralysis of a limb can be partially remedied by immobilizing that limb and forcing use of the other limb.

Even people who have had one hemisphere of their brain removed can sometimes compensate by using the other half of the brain.

If the brain can reorganize to compensate for traumatic brain injuries, why couldn't it (potentially) reorganize to compensate for whatever neurological deficits are the root of stuttering?

In the absence of research to prove this, I'm not claiming that this is possible. But I'm suggesting that it MIGHT be possible - why not? - and that we should remain open to the possibility, rather than rejecting it without evidence.

For me, the fact that these "eminent" "researchers" are contradicting each other just confirms how little anybody knows about the origin of stuttering. People speak about an "underlying neural deficit" - presumably something that is present at birth. To talk about a "neural deficit" is ridiculous if it has not been clearly identified. Pachman says that stuttering might return because the neural deficit is not removed. Onslow says that neural plasticity removes the neural deficit. I would like to clunk their heads together (like in "The Three Stooges") and ask them, "so where is the neural deficit? What does it do? Where in the brain is it?" Show it to me on a brain scan. You pinheads!".

Of course neural plasticity is a big factor; a concert pianist's brain is different in some areas from my brain; a stutterer's brain is different from a fluent person's brain because he/she has spent many years stuttering and avoiding and having anxiety; as Ora mentioned above, neural plasticity is a big factor in recovering stroke patients. Neural plasticity is NOT the issue here. The issue is that nobody truly knows the origin of stuttering, and from the way these tired old incompetent researchers are talking about some nebulous unseen neural deficit, it will take many decades before we get to the bottom of it. In the meantime, they rake in the money from this fraudulent Lidcombe program!

Ora you are committing the straw man fallacy. I never said that neural plasticity can not do some re-organisation. But I said that THERE ARE LIMITS. Actually 90% of the kids are able to recover, so may be their brain are plastic enough and our brains are either not very plastic, the deficit great or we are unable to re-train our brain?

Let's take a look at what you originally wrote: "the treatment does not—cannot—remove the initial condition (the underlying neural deficit). In fact, full recovery of kids in any disorder due to the high plasticity is a myth, a feel-good phrase."

Maybe I'm guilty of taking your words at face value, when you didn't really intend them that way. Maybe you were exaggerating. But look at the plain meaning of the words: "the treatment ... cannot... remove the initial condition (the underlying neural deficit)". Hmmm.... A claim that Lidcome "does not" remove the underlying neural deficit is fine. I know very little about Lidcombe and will not quibble with any statements of Lidcome. But a a claim that a treatment "cannot" remove the underlying deficit does sound to me like a claim that the brain is insufficiently plastic to be retrained (neuronally reorganized).

And you continue to say "full recovery of kids in any disorder due to the high plasticity is a myth". Why do you think so? What's your basis for this? I can understand that you might be skeptical about Lidcombe's claims to affect brain structure at the neuronal level. But to claim that full recovery in any disorder due to high plasticity is a myth? That's just not consistent with the recent evidence.

And even if you're not familiar with this recent evidence, or don't believe it - what's your evidence that a treatment cannot remove the underlying deficit? Why not be agnostic and open-minded, rather than making extreme claims? Maybe you have a reason for believing this, or maybe you have a stake in wanting to to believe it. But evidence?? What evidence do you have for this strong assertion?

Maybe you were exaggerating in your original post. Maybe your negative opinion of Lidcombe induced you to say more than you mean. But that is what you said, and that's what I was responding to.

I meant to write: ">>>ALL<< Kids can recover when they are very young because of the high plasticity". First, all never actually recover fully but the brain re-organises itself to compensate and this compensation is rarely equally good as the original but good enough for all practical normal purposes. Second, there are limits to the brain to compensate, and many kids do not improve.

I just want to dispel the notion that we are a blank slate that can also be changed. We are like a house, you can renovate it or add one more room but you cannot completely remodel the house. Or you can make a Beetle drive very fast but you can't make a F1 car out of it.

How come you guys always let the SFA and its queen off the hook for all the crap therapy and research put forth by the queen and her fife's --- being "therapy" on children and adults who stutter?

SFA = LIDCOMBE + FLUENCY TRAINING + STUTTERING MODIFICATION ...Makes money and legacies for the peddlers of CURES and PREVENTION snakeoil; unfortunately, many of us don't talk as much after the cures are delivered as "therapy".

One thing the queen and her queendom does have is money...and lots of it.

Oh well...There is still primo desert land available - Contact your local SFA therapist.

I like the part where it's implied that speech pathologists are in it for the money. In australia, a speech pathologist will earn roughly $23 an hour. This increases by approximately $1 an hour per year of experience.

For comparative purposes, this is about $3 more than a supermarket check-out operator earns.

People do not spend 4 years of their lives earning a degree in this area for the money. There are far easier ways of earning it.

About the wages of SLPs in Australia: yes they are not very impressive - particularly when compared with doctors and psychologists. But if an SLP has a private practice and specializes in, say, stuttering therapies, he/she can make a lot of money. In 2005 I enquired about the cost of stuttering treatment from Susan Block's private practice. She charged $100 for a 1 hour session ... and that was 4 years ago. She's a millionaire. And I'll bet that Lidcombe is quite expensive.

I had thought that the purpose of self help support groups were to offer support for their members.

To me, an interested outsider, it does appear on both continents that the directors and professional boards of the self help groups are doing their best to endorse and support therapy agendas and the professionals that advocate for that therapy agenda.

At the local/regional levels, it appears members are served.

If I were an adult who was affected by stuttering and therapy as a child stuttered, I'd do all I could to make the world a better place for kids who stuttered.

I would suggest the leaders in the self help movement to focus and listen to its members experiences. I believe to not do so would be a mistake.

My dad was a guy who stuttered. I always wondered about his stuttering and why he said so little. As I follow this blog, I'm beginning to get a glimpse.

"To me, an interested outsider, it does appear on both continents that the directors and professional boards of the self help groups are doing their best to endorse and support therapy agendas and the professionals that advocate for that therapy agenda."

I would be grateful if you would explain the following: what is a "therapy agenda"? Why do you think an organisation like the BSA has a "professional board"?

"At the local/regional levels, it appears members are served."

How would you apply this to the BSA? What is your evidence this is happening at a local level, but not a national one in the UK?

"If I were an adult who was affected by stuttering and therapy as a child stuttered, I'd do all I could to make the world a better place for kids who stuttered."

Absolutely. That's what our members keep telling us to do.

"I would suggest the leaders in the self help movement to focus and listen to its members experiences. I believe to not do so would be a mistake."

The 'leaders' of the BSA are elected by its members. At one point, Tom was one of them.

I don't think I'm a particularly angry person but if you think so, then perhaps you should have said: "George, sorry to hear that every stutterer is not as angry as you are".

If you were to get your hands on a time machine, and go 40 years into the past, you will find that the level of understanding of stuttering has hardly progressed. In this period, we have had significant progress in the fields of physics, genetics, computing, neuroscience, astronomy ... etc. but the nature of stuttering is still as much of a mystery and the treatment of stutterers hasn't changed a bit. Practically no progress!

We have people like Jerry Maguire trialling different drugs ... "oh, this drug didn't work too well, let's try this other drug" without first understanding the drug's implications ... and it's been going on for years.

We have SLPs using the exact same therapies that were used in 1960s ... and with the same results. And if it doesn't work (as in most cases), the customer does not receive a refund. I asked one SLP why there is such high rate of relapses among stutterers who have completed her therapy program. She answered, "it's because the clients don't do what we teach them". Great, so it's the stutterer's fault!

And now we have this Lidcombe program. People presumably pay a lot of money for Lidcombe, but its true efficacy is unknown. I've heard it has an 80% success rate but, as we all know, 80% of all childhood stutterers become fluent without treatment. And now there are also doubts about the long-term benefits of Lidcombe. Does the word "fraud" come to mind? It should!

Why is the state of stuttering research & treatment in such a sad state? I say that it's because it's generally run by SLPs. Mark Onslow is a SLP - he's not a neurologist, he's not a biologist, he's not even a medical doctor - he's a SLP. I've spoken to many newly qualified SLPs in Australia and found that they generally have no idea about stuttering; stuttering is only a small part of their undergraduate course, even though it's the most prevalent speech defect. In fact, I've been shocked to find that they have no idea about the speech centres of the brain and how they work together. All they know about stuttering is how to identify a block and how to use the standard therapy.

I've raised these kinds of points at a couple of conventions, and was basically ignored. Everybody was more interested in talking about their own "research", and then meeting people and having a good time. I don't go to conventions anymore.

Yes, Norbert, you may call me angry, and you're probably right. Stuttering research is in the hands of incompetents, and progress has been stunted. My question to you is: why aren't you angry?

You said "If you were to get your hands on a time machine, and go 40 years into the past, you will find that the level of understanding of stuttering has hardly progressed. In this period, we have had significant progress in the fields of physics, genetics, computing, neuroscience, astronomy ... etc. but the nature of stuttering is still as much of a mystery and the treatment of stutterers hasn't changed a bit. Practically no progress!"

That is clearly inaccurate. Therapy for adults and for children was very different 40 years ago to what it is now. Wendell Johnson, anyone? It would be like saying 40 years of cancer research have been in vain because people are still dying from it. 40 years of space research are in vain because we still haven't travelled to Betelgeuze.

Re the drug treatments - what would youy have them do? No trials? Nor errors? Magically come up with The Solution?

You say about young SLPs that "they have no idea about the speech centres of the brain and how they work together." I fear you can't have it both ways - if as you say science and research have made no progress in identifying potential causes of stammering, what should these young SLPs be taught?

"My question to you is: why aren't you angry?"

Oh, I am. I just think it's better to have a constructive way forward and look at how problems can be addressed.

BSA is angry that the majority of SLTs, as you say, don't feel confident in treating stammering children and rather put them on review - and I put this to the minister just the other day.

BSA is angry that the majority of stammering children are still more likely to start school without having their stammering addressed - my colleague Margaret says "It's a scandal!".

We are angry that in many parts of the country adults simply won't get treatment.

We are angry about a great many things and what we are doing about these you can read on our website; but we have found that in every one of those things we are angry about therapists share our concerns and have been the some of the best allies in getting things to change. For you they seem to be at best naive idiots, at worst malicious, money-grabbing charlatans; in my experience they are professionals with a deep concern about and interest in their clients' welfare.

"It is always the stutterer's fault. Thanks for clarifying that point."

Why do you speak of 'fault'? Where have I mentioned 'fault'?Why do you think the fact that there is as no "Guaranteed-Once-And-For-All-Cure-Applicable-To-Anyone-Who-Has-Ever-Stammered" would be someone's 'fault'?

"but the nature of stuttering is still as much of a mystery and the treatment of stutterers hasn't changed a bit. Practically no progress!"

I think you're simply misinformed. There's plenty of research that's been going on. Maybe you should start going to conventions again. Or speak with SLT with expertise in fluency disorders - which is only a minority of SLPs. Your statement that most SLPs don't know much about stuttering is probably true, and that's a shame.

You wrote: "We have SLPs using the exact same therapies that were used in 1960s ... and with the same results.... I've spoken to many newly qualified SLPs in Australia and found that they generally have no idea about stuttering; stuttering is only a small part of their undergraduate course, even though it's the most prevalent speech defect."

Sure, some SLPs are not familiar with state-of-the-art treatments. Wouldn't it be nice if everyone could be an expert in everything? (Your family doctor could then treat your cancer, or perform micro-surgery on your hand, or treat your stuttering, or do psychiatric treatment, etc.) That's the reason why there are specialists.

Good to see some anger from you. I hope you express your angger at conventions.

You wrote:

"That is clearly inaccurate. Therapy for adults and for children was very different 40 years ago to what it is now. Wendell Johnson, anyone? It would be like saying 40 years of cancer research have been in vain because people are still dying from it. 40 years of space research are in vain because we still haven't travelled to Betelgeuze."

You're right that we have not managed to travel very far outside our planet, and certainly not to Betelgeuse, but there has been significant progress in space exploration in the past 40 years; we've sent probes to Mars, made flybys of Venus, Jupiter ... And there has been much progress in the understanding of astrophysics, planet formation, etc. You're right that there are still people dying of cancer, but there has been progress in the understanding of the nature of cancers, and some cancers can now be cured (e.g. lymphoma). In short, there has been *progress* even though our knowledge is still incomplete. With stuttering, I see that there has been practically zero progress despite the "plenty of research that is going on" (as Ora put it). Scientists can tell you how pancreatic cancer develops (although there is no cure) - but *nobody* can tell us with any certainty how stuttering develops. And, I repeat, I believe this is because of incompetent researchers.

You also wrote:"Therapy for adults and for children was very different 40 years ago to what it is now. Wendell Johnson, anyone?"

Wendell Johnson was a stutterer himself. He promoted the idea that a stutterer should just throw caution to the wind and just speak, and he also promoted a fluency technique to get out of long blocks. His reputation was badly tarnished by his involvement in the Monster Experiment. Similar therapies are still in use today. Johnson's theory of the cause of stuttering has been revisited in a more modern way by implicating the amygdala (see Darrel Dodge's website) - but it's still basically Johnson's theory. Also, the fluency shaping technique that is promoted by Susan Block (Ora, she's a specialist in stuttering) has been used for the past 40 years (at least), and with the same results. The notorious air-flow technique promoted by Martin Schwartz (which, despite Schwartz's claims, is no better or worse than any other technique) was actually used in the early 1960s, long before Schwartz came on the scene.

You also wrote:"if as you say science and research have made no progress in identifying potential causes of stammering, what should these young SLPs be taught?"

It depends on the role of a SLP. If a SLP is simply required to identify blocks and to robotically administer stock standard therapies (the types that have been used for decades), then their training is adequate. If, however, they should be required to have significant input into research (or at least to be able to think about the causes of stuttering), they should at the very least have an understanding of the speech centres of the brain, and of speech production/development. I mentioned "Broca's area" and "Wernicke's area" to one graduate SLP, and she said, "oh, they briefly mentioned it in our course" ... the poor thing had no idea.

You wrote:"Re the drug treatments - what would youy have them do? No trials? Nor errors? Magically come up with The Solution?"

No, not magically come up with a solution. Research into potential causes of stuttering is needed. Once we have a *theory*, we might look at developing specialized drugs (if appropriate). The way things stand at the moment, "researchers" say, "oh, a stutterer's brain has a dopamine imbalance in certain locations ... let's try an anti-psychotic drug" without understanding how the dopamine imbalance was caused in the first place (maybe it was due to years of stuttering). Look at the results ... they've been very poor and virtually indistinguishable from placebo effects.

George - you wrote "Look at the results ... they've been very poor and virtually indistinguishable from placebo effects."

Studies have shown that haloperidol (Haldol) and risperidone (Risperdal) have been shown to improe symptoms in double-blind, placebo-controlled studies.

More recently, Maguire did a study on olanzapine (Zyprexa) in 2004. Double-blind, placebo-controlled, peer-reviewed and published. Results were statistically valid, and on average a reduction of 33% percent in stuttering, compared with 14% on placebo. Not earth-shaking, but much more than "virtually indistiguishable". (I've got the specific reference and can point you toward it. In fact, I've got the pdf, and could send it to you if you write me at omccreary (at) gmail (dot) com.)

Haloperidol and resperdidone are not great drugs because of side-effects. And even olanzapine has major problems. But it's not accurate that the drugs that have been tested are virtually indistinguishable from placebo effects.

You criticize the drug research because researchers don't know the reasons for the dopamine imbalance. Sure, that would be interesting to know, but there are plenty of drugs where the mechanism of action isn't known. This is true for hundreds of drugs - the mechanism of action is not known, but the drugs work. As long as they work, and as long as the side effects are manageable, why not use them?

You wrote:"You criticize the drug research because researchers don't know the reasons for the dopamine imbalance."

That's not the only reason I criticize it (although I do think it's a good reason).

As for Haloperidol, I remember when they were trialling it on stutterers. This drug is used on people with Tourettes, and the researchers somehow reasoned that stuttering and Tourettes are related (I'm very far from convinced), so they thought, "hey, let's try this drug on stutterers". The result was the side-effects you mentioned - i.e. severe dyskinesia. I have read the results of other trials - particularly the anti-psychotic drugs. The results have not been very encouraging; quite a few of the "guinea pigs" showed no improvements, a lot had only minor improvement, and a lot of the placebo group had some improvement. The research papers are notoriously unclear and unconvincing about the possible extent of the placebo effect. And I've yet to see long-term studies. Now we come to pagaclone; this is a failed anxiety drug. Sorry if I sound cynical, but pharmaceutical companies spent a lot of money developing this drug, and it turned out to be a dud as an anxiety drug. But anxiety plays a big part in stuttering, so "let's try this out on stutterers".

To me this yet another branch of stuttering research that is not being done properly; it has disappointed, discouraged and disillusioned me.

Wendell Johnson, outside of his Mengele moment, was a brilliant person who stuttered, researcher and therapist. The professional lineage that followed his mentorship remains legendary in the field.

If you ever had the opportunity to listen to him regarding his own struggle with stuttering, we people who stutter would be wise to figure out how he learned to talk and overcome his stuttering before his death. That man could talk. He believed others who stuttered could as well.

As to what it will take to change the nature of research and therapy in stuttering, I can only offer my own speculation.

Here in the States, research and therapy for the disorder of Autism only began in earnest following large $$$ lawsuits filed by parents of children challenged by autism who experienced harmful and negative therapy and outcomes in the public school setting.

I do believe it will take the same impetus, effort and $$$ lawsuits by parents of children who stutter to spur the professional field to change it's approach to research and therapy in stuttering.

This, I unfortunately believe, will only happen when we who stutter end our continued endorsement and continued allowance of terrible research and even worse therapy. We who stutter have by in large bought into the notion that it is never the fault of the therapy...never the fault of the therapist...and always the fault of the person who stutters for failure in therapy. It is we who must facilitate the massive change - it will not occur following the current professional path.

These are only my views, and I am quite sure the coals will be poured now.

"Wendell Johnson, outside of his Mengele moment, was a brilliant person who stuttered, researcher and therapist. The professional lineage that followed his mentorship remains legendary in the field."

You mean apart from the fact that he caused severe mental problems for defenceless orphans in an experiment that soundly disproved his diagnosogenic theory of stuttering. He himself finally admitted he was wrong about that.

"to change its approach to research and therapy in stuttering."

Change it to what, precisely?

"We who stutter have by in large bought into the notion that it is never the fault of the therapy...never the fault of the therapist...and always the fault of the person who stutters for failure in therapy."

You still haven't replied to my query why you feel that there must somehow be 'fault' on either side. Is it a zero sum game for you?

You wrote:"Wendell Johnson, outside of his Mengele moment, was a brilliant person who stuttered, researcher and therapist. The professional lineage that followed his mentorship remains legendary in the field."

I happen to agree with your statement. His research was very important and very insightful, and he made his observations in a time when brain research was virtually non-existent. Yes he made some errors, including the very evil and despicable "Monster Experiment", and this has tarnished his entire legacy to the point that his whole research is now being largely ignored. This is a shame; we mustn't throw the baby out with the bath-water.So I for one will not be pouring any hot coals.

You said:"That's your prerogative. I personally don't think disappointment, discouragement and disillusionment are very useful ways of reacting. So, what are you *doing* about this?"

I've attended conventions and made my views crystal clear to the so-called "eminent" researchers. I've had email discussions with such researchers and, even though I've never actually worked in that field, I proved to myself and to them that I know more about the subject than they do (that's not very difficult). I've even visited 2 of these researchers personally and had discussions with them. At every point, I have been stone-walled and ignored. These people are trying to keep the status quo because it keeps them in power and in gainful employment, even though these "emperors" have no clothes. So, you ask what am I doing about it? I've done my best with the time and resources available to me, and it has come to nothing. If every stutterer did what I did, maybe something can change. But stutterers who attend conventions seem to be more interested in being social and having a good time. People on this blog, including yourself, Ora, and Tom, have some influence, so it might help if you listen to the point of view of an ordinary stutterer like myself. From the second half of next year, I'll most probably have more free time, so I'll be a more active troublemaker. For now, I have to just suffer in virtual silence.

You are THE professional stutterer worldwide! Your whole (professional) life is about stuttering. You constantly out yourself as a stutterer, you are lobbying for stutterers, you review all kinds of treatment and research, go to all kinds of conferences. You have the helicopter view and the microscopic view. You are exposed to all kinds of insights into stuttering which enables you to handle life with a stutter better than most. And you live in an environment that is completely supportive of your handicap. Try working in another environment and you will see more limitations. Not saying you should as the BSA needs you!

Well then, define (ideally in a new thread?) what *is* the typical stutterer? Do you think someone who thinks they have proved to researchers *and himself* that he knows more about the field than they do would be an ordinary stutterer?

"you review all kinds of treatment and research"

I think I'd rather leave that to others.

"You are exposed to all kinds of insights into stuttering which enables you to handle life with a stutter better than most."

Now, *that's* an interesting comment. These insights are available for free on the BSA site and to whoever engages in the self-help movement and talks to people who stammer. But I'm not sure how anyone but me could judge to what degree I handle my stammer better than most?